Autism treatment gaining acceptance

A Ponte Vedra Beach clinic uses a variety of approaches tailored to each child.

DEIRDRE CONNER

PONTE VEDRA BEACH - The clinic is easy to miss, just a squat, unassuming modular on Palm Valley Road.

Parents who have traveled thousands of miles to see these physicians often wonder: Could this really be it?

In the tiny waiting room, there's no sign of a receptionist, or even a little sliding-glass window. The walls are hand-painted with zoo animals, and the floor is packed with toys. It feels more like a house overcrowded for the holidays than a sterile, efficient doctor's office, which Julie Buckley and Jerry Kartzinel say is exactly the point.

The partners and pioneersin a biomedical treatment for autism are digging out from an avalanche of calls after one of their patients' parents, actress Jenny McCarthy, went public with a memoir of her family's life after her son's autism diagnosis. The two, especially Kartzinel, have been speakers for years on the topic and draw patients from around the world.

Clearly, though, there's more to this than star power. The approach appears to be gaining traction - or, perhaps, acceptance - with some traditional physicians and pediatricians, despite its controversial affiliation with those who believe vaccines cause autism.

Perhaps it's because they believe the science behind the treatment. More likely, though, it's because their patients' parents do.

Whatever the reason, Buckley thinks the mainstream research establishment, such as Tom Insel, the director of the National Institute of Mental Health, is listening. Buckley and Kartzinel were invited to the conference sponsored by CARD, the Center on Autism and Related Disabilities. And, she said, the American Academy of Pediatrics finally sent a representative to a Defeat Autism Now conference.

"It's a step in the right direction," Buckley said.

Defeat Autism Now, or DAN, is the term that describes the regimen used by doctors such as Buckley and Kartzinel and involves a range of treatments tailored to each child. They include a wheat-free, dairy-free diet, vitamin supplements and, for some, chelation (chemicals that remove metals from the body) and time in a hyperbaric oxygen chamber. They test for trace metals such as mercury and aluminum, do biochemical analyses of mineral levels in the blood, and test for allergies, among other things.

It takes time, and money, from the monthly expense of supplements to thousands of dollars for more involved treatments that rely on equipment and medicine. Insurance coverage is hard to come by.

"It depends on what the kids present with," Kartzinel said. "We take histories, and that's how we learn what they need."

Even before this fall, their waiting list was more than a year long and their patient list stretched from coast to coast - and beyond.

Then came McCarthy's appearance on The Oprah Winfrey Show, detailing the treatment she believes brought her son out of the depths of the disorder, which usually appears before age 2 or 3.

Call volume spiked; the waiting list doubled.

Kartzinel wrote the preface to McCarthy's book and appeared with her on Larry King Live, part of a high-profile media blitz that reached fever pitch after the segment on Oprah.

Kartzinel embraced the method in its infancy; he introduced Buckley after her daughter was diagnosed with autism.

There's no proof - hard, solid, double-blind repeated studies proof - that the DAN approach works. In fact, studies haven't found much in the way of conclusive evidence about almost any autism treatment. What researchers do know is that parents are seeking out these so-called "alternative" treatments in droves. And individual success stories are becoming the driving force in the direction of research and treatment for autism.

A 2005 study found that more than a quarter of parents of autistic children reported using special diets for their children, and nearly half reported using vitamin supplements. An ongoing study on the effectiveness of chelation reported that one in 12 autistic children may already undergo the chemical process used to remove mercury and other metals from the body. The study is not yet complete.

'The V-word'

There's a reason all this is so controversial, why acceptance has been hard to come by.

Kartzinel calls it "the V-word."

That's because mere mention of vaccines is enough to cleave an instant chasm between parents who believe childhood immunizations are the source of their child's affliction and those who don't. Whether in casual conversation, blogs or support groups, the divide is filled with bitter rhetoric - arguments as toxic as the mercury that one side, including Buckley and Kartzinel, believes broke theirchildren.

No large-scale study has ever found a link between vaccines and autism. There's no groundswell of research that points to a cause or treatment for autism, a complex disorder that most scientists believe has both environmental and genetic underpinnings.

The idea is that one or more genes are susceptible to one - or many - hazards in the environment.

It's just that no one knows precisely what they are, said Charles Williams, a University of Florida pediatrician and geneticist and consultant to the CARD program in Jacksonville.

"[There is] truly something in our culture or our environment that makes it more risky today than 30 years ago," he said, something that makes the disorder all the more perplexing.

Williams believes that a surge in genetic and environmental research could result inhuge advances in treatment over the next two to five years. There are also clinical trials testing the type of treatments used by doctors such as Kartzinel and Buckley, from antibiotics to chelation to anti-psychotic drugs to hyperbaric oxygen therapy to supplementation of vitamins B, C and zinc. The National Institute of Mental Health is set to conclude a four-year study into the wheat-free, dairy-free diet in 2008 and also will reportthat year on a 130-patient study on mercury chelation.

Right now, though, families have to stumble through a maze of approaches after getting an autism diagnosis. And because children often receive a cornucopia of different treatments, it can be difficult to figure out which therapy is working.

"Someone told me once, If you're not thoroughly confused by all the treatments, you don't understand them," Williams said. "There's no prescriptive way."

In the maze

Rebecca and Richard Rose know the confusion - and the alienation. They knew their pediatrician didn't approve when they brought their 4-year-old son, Johnathan, to Buckley - although he didn't tell them explicitly not to do it.

They say they've seen changes in John, who is on the diet. He also attends a private day care that uses Applied Behavioral Analysis and caters to children with autism, where about half are on the same diet. His vocal abilities and behavior have improved, Rebecca Rose said.

"I thank God we've been stuck in her path," she said.

So does Jennifer Duke, who is both traditional physician and parent of an autistic child. Most DAN doctors have been touched by the disorder in some personal way.

Her 12-year-old son has Asperger's, a disorder on the autism spectrum. After years of difficulty and a misdiagnosis of Attention Deficit Hyperactivity Disorder (ADHD), Duke found Buckley and Kartzinel. Eventually, she and her partner sought training from the two as DAN doctors.

She has added that to her family practice in Macon, Ga., and recommends her pediatric patients split up vaccines into individual portions or delay them, instead of to giving them all at once.

A traditionally trained physician, she was skeptical at first.

"My first blush was, these are people who are conspiracy theorists, the-government-is-trying-to-poison-us people," she said.

Even now, Duke admits she's not yet completely "out of the closet. I want to just do it and let the results speak for themselves."

deirdre.conner@jacksonville.com, (904) 359-4504

Autism treatments

The U.S. Centers for Disease Control estimates that as many as one in 150 8-year-olds may have autism. But treatments vary as wildly as the children on the autism spectrum. And unlike chemotherapy for cancer or antipsychotics for schizophrenia, few of the regimens are backed by years of solid research. Only Applied Behavior Analysis and its offshoots have gained broad acceptance from researchers. The American Society for Autism recommends that parents keep in mind that scientific studies are often difficult to do because each individual on the autism spectrum is different. Research into all of these treatments is ongoing.

- Gluten (wheat)-free, casein (dairy)-free diet

- Chelation

- Applied Behavior Analysis (ABA)

- TEACCH (Treatment and Education of Autistic and Related Communication Handicapped Children), a comprehensive approach with services ranging from speech therapy to a specialized teaching system